Sewing, drawing, thinking and writing about life with Ehler's Danlos Syndrome

Tag Archives: social construct

Plenty of people have written about the oddities of social niceties; particularly the expectations bundled into the question, “How are you doing”/”How are you?” as greeting. We all know that 90% of the time, this is not a question that expects (or desires) an honest answer. The prescribed response is, “Fine! How are you?” To which the answer is also supposed to be, “Fine!” Then we go along our merry way, where everyone is fine and no one is burdened with too much information about one another.

Having spent much of my life emotionally chained to a person who is borderline and a compulsive attention-seeker, I learned to really dread that question. That person’s answers were often so packed with TMI one felt they might have stepped in something squishy and hard to remove. As a result, I developed a severe allergy to any and all attention-seeking. I became the sort of uptight white lady who would be aghast (and a tetch judgmental–ha, okay, far more than a mere tetch) if someone were to suddenly launch into an inappropriately intimate response to the question.

An example: I recently ran into an acquaintance at a local shop. I asked, “How are you?” and swear to dog, within minutes I was regaled with information about a pregnancy scare, a broken condom, and someone’s spasmodic vagina. Honestly, most of me immediately ran away, leaving only a shell to nod and say, “Oh…” and “Wow” in a faint voice. It’s a double-edged sword, in that having suffered much judgement in my life, I endeavor to be a person that others feel they can talk to while at the same time often being the listener and not the speaker in those exchanges. They can tell me all that, and I can leave them feeling like it was okay, and they know that I am doing “fine.”

So, while I became the X-man of Showing Not My Hand, I also ended up being pretty damn isolated and lonely. I think that’s a big part of why I find blogging so enchanting–I get to talk about myself, and for much of my life, I’ve not allowed myself to do that. It also results in a sort of boiling over, though—when I start to resent how much I am expected to not only care about others but to also always be FINE, I may lose my composure in a big way, becoming the vulnerable mess of raw nerves and anger that I want no one to see. So I walk this line, fearing that I might accidentally share and be punished, while also brimming with unspoken reality (one of the traps that my borderline often set was to furiously attack anyone for sharing anything that might distract the audience from her, the center of the universe. That’s actually why you can’t google this blog–even as cloaked as my information is, the idea that I speak of my own experience would trigger that person to pour gasoline all over this and set it ablaze. It’s happened before.).

Having this wild and woolly collagen-based disorder that affects everything in my body has added a new wrinkle to this set-up. I’m not sure that I will ever, really, feel “fine” again. Yet, I do not want to be that person that spews a litany of problems every time a socially prescribed inquiry is made. I’ve come a long way, in that I am no longer completely locked down and committed to always being FINE–I have found some people who do want realistic answers and respond lovingly when I say, “I’m not feeling well” or “I’m having a hard time coping today” and such. Yet, even in intimate relationships, I fear that a daily, honest answer will wear away at those closest to me.

I tend to go through a sort of triage when my spouse asks me, “How are you feeling today?” Like this morning when he asked that. I could list everything: “Well, I slept all night last night so that was great but my carpal tunnel is flaring up and my hands hurt, and my hip wakes me up briefly at night and my shoulder is fucked up and I think it’s starting to cause nerve damage, and I am really dreading first dress tonight and fantasizing about quitting my job and becoming housebound.” On the other end of the measuring stick would be, “Fine.” So to be in the middle, I try to pick maybe two things. “I slept well, finally, but I wish we didn’t have first dress tonight.” What’s most pressing in my load of troubles right this minute? I worry he’ll get compassion fatigue eventually and resent the fact that I can’t just be “fine” anymore.

The key to some of that is having more than one person to confide in. I cannot, and should not, make him the only bearer of my ills. I have a Shrink for that (although tomorrow is our last visit as she’s retiring and I haven’t set up a new one yet). I have a handful of close friends that I feel pretty comfortable with and that I think won’t start to see me as just a set of illnesses and not a person. I have my mother. I have the message boards at the Ehler’s Danlos Foundation’s group on Inspire.com. And, I have this blog. Everyone’s life, ultimately, is lived alone. This both terrifies and comforts me and I try to find my way through the social swamp and determine when the answer should just be “fine” and when it can be in the middle and when the rare occasion that I can set the whole mess in front of someone presents itself.